When Tuesday’s clinic visit came, we figured it would be a relatively short visit. That turned into what we thought would be an overnight stay at the hospital so they could run a couple of tests the next day. Then one night turned into two which quickly became three. Finally, after four nights in the hospital, Courtney is back in her own bed.
This was a long week made longer with uncertainty. Each day brought with it more questions that seemed to take forever to get answered. When is the EGD? When do we get results? Can Courtney go home? What’s causing the nausea? Will there be more tests? Can Courtney go home tomorrow? Is that a new medication? What are we waiting for? When can we talk to a doctor? Why are we here?
Eventually most of the questions were answered, and Courtney’s condition slowly improved. Her blood counts took a turn for the better. The pain she had been feeling just below her ribs subsided. And, the nausea, that had been so persistently bothering her for the past week, finally relented today.
Here’s a quick recap of what transpired since Wednesday:
Thursday – Courtney finally underwent the EGD (For those of you wonder how to pronounce “Esophagogastroduodenoscopy”, here’s the pronunciation - ĕ-sof′ă-gō-gas′trō-dū′ō-den-os′kŏ-pē). Other than the fact that Courtney’s resistance to Versed caused her to fight the nurses as they forced the scope down her throat, the procedure went well. The doctor’s report actually includes the statement, “After adequate conscious sedation was achieved, the patient was intubated and the scope advanced under direct visualization to the third part of duodenum.” I’m not sure how they define “adequate.” I suppose they thought Courtney wouldn’t remember it. I think that’s usually the case with the “conscious sedation.” Anyway, they got the information they were looking for, and in the process took some nice pictures of Courtney’s innards. (Not many people can say they’ve seen their duodenum.) The verdict – Courtney has gastric paresis and acute gastritis. Given the recent chemotherapy and all the meds she’s been taken, neither of these was a surprise. In the process, they took a couple of biopsies. These results won’t be back for a few days.
After the procedure, Dr. V. started Courtney on the steroid Prednisone. This is used to counteract the GVHD, if any, and hopefully help her feel much better. Unfortunately, it has the unpleasant side effect of causing restlessness, and Courtney didn’t sleep well Thursday night.
Friday – First official day to be off the Foscarnet. Thank goodness. Hopefully she won’t have to revisit this drug. And hopefully we see her condition steadily improve. Basically Friday was spent weaning Courtney off of the IV meds they had been giving her since Tuesday. By “weaning” I mean switching to an oral form. They want to make sure she keeps them all down before sending her home. Right now, their biggest concern is that she consistently gets her antibiotics and Prograff (anti-GVHD drug). They really don’t want these to come back up or for her not to take them because she feels too nauseous. So, one more night in the hospital. And it was NOT a fun night.
The night was long because she had a bad reaction to another drug. Add Meclizine to the list. Dr. V. decided to try it to help her nausea since the scopalomine patch didn't seem to be helping that much. She took her first dose yesterday afternoon without problems. However, her second dose, given around midnight last night, made her react much the same way compazine did back in October. Skin crawling, muscle twitching, painful, irritating, etc. Unfortunately, the nurse had to page the doctor to get permission to give her benedryl. So, it took a little while to get and took a while longer for it to work. Since that was the only new medication given, and since it's kinda in the same family as compazine, we were fairly confident that meclizine was the culprit. So, we told her nurse to skip the next dose, due at 6:00 AM, until we could discuss it with Dr. V. Well, at 6:00 AM the nurse came in, nudged Courtney awake just enough so she could take it. Courtney, having only been asleep for barely three hours, took it without really knowing what it was. And, sure enough within an hour, was feeling the effects again. Fortunately, Dr. V was at the hospital by then, and Courtney was able to quickly get the benedryl and dilodid via IV. That helped alleviate the side effects much faster than last night. So, no more meclizine.
Dr. V gave Courtney the go ahead to go home if she felt up to it. After sleeping for a few more hours, she was feeling much better and very much wanted to go home and see the kids again. So we packed up and headed home. Now, after a good evening of spending some time with the kids, eating a couple of small meals without getting nauseous, she’s sleeping soundly in her own bed once again. Quite the contrast to last night.
One more thing. Dr. V came in yesterday evening and told us the genetic tests came back. The report states that her cells were >95% donor (Tracy) cells!! >95% is the highest it can be reported. And Dr. V said basically it's 100%. She also said, "No recipient (Courtney) DNA detected." Which means no leukemia, and less likely that it'll reappear!! Very good and happy news. Courtney couldn't wait to call Tracy, but when we did get her on the phone, Court was too emotional to talk.
It's nice having good news once again. These happy milestones help soooo much, especially after a very long and crummy week.
Courtney
taken 8/4/07
Courtney and her kids
taken 8/4/07
Showing posts with label AML. Show all posts
Showing posts with label AML. Show all posts
Saturday, January 19, 2008
Monday, January 14, 2008
D + 33
I don't do this often enough, but thank you all for your comments and kind messages these past few months. Gosh, I can't believe it's been "months". That's so weird to say that. Anyway, your thoughts and well wishes really mean a lot to us. And even if you haven't left a message, thank you for taking the time to follow along. Your thoughts and prayers have given way to extraordinary actions that literally helped to carry us through this ordeal. Thank you!!
Today was mildly better than yesterday. Although it didn’t start out that way. She was debating going to the doctor today, mostly for peace of mind since she still has the same ailments she had on Thursday, but also wanted to get a better dose of anti-nausea medicine in the form of IV fenergan. Really not wanting to make the trek to the clinic, knowing that it would likely be a four hour ordeal including driving time, and knowing we had to return tomorrow morning no matter what, we asked if it would be possible for the home health nurse to come administer the fenergan. Laura, Dr. V’s PA, hesitated, thinking that it would take more than a day to get approval and get a nurse out to our home. We asked her to at least try, and within a couple of hours a man was delivering the supplies to our home and a nurse arrived shortly thereafter to give Courtney the medicine. It seemed to help quite a bit, though not completely. She was able to keep her medicine down and eat a little this evening. The home health people, Option Care, have been really good about coming when we’ve needed them. This is at least the third time that they’ve come through when the doctors and nurses doubted they would. We’ll have to keep it in mind the next time Courtney just needs a little extra meds to get her through the day more comfortably. It’s always nice to have options that don’t include fighting traffic or spending time in uncomfortable waiting rooms. Nothing beats the comfort of your own bed. And we especially like ours.
Tomorrow Courtney has an appointment at the BMT. It’s a routine visit, but we’re hoping to have some results from Thursday’s biopsy. Tune in tomorrow to find out.
Adding to today’s woes, Aidan was also sick today. Our normally active and precocious two year old was a miserable lump on a couch today. He seemingly had his own bouts of nausea periodically throughout the day, and spiked a pretty high fever this afternoon. He’s been sleeping soundly the past five hours, so hopefully he’ll wake up to a much better day.
If you should add Aidan to your prayers, please also add a little friend of ours, Alexa Aigner. She’s three years old and has been fighting her own cancer for over two years now. She’s had her own down days lately, and could use a little boost. Click on her name to read about her amazing and painful journey eloquently related by her mother.
Today was mildly better than yesterday. Although it didn’t start out that way. She was debating going to the doctor today, mostly for peace of mind since she still has the same ailments she had on Thursday, but also wanted to get a better dose of anti-nausea medicine in the form of IV fenergan. Really not wanting to make the trek to the clinic, knowing that it would likely be a four hour ordeal including driving time, and knowing we had to return tomorrow morning no matter what, we asked if it would be possible for the home health nurse to come administer the fenergan. Laura, Dr. V’s PA, hesitated, thinking that it would take more than a day to get approval and get a nurse out to our home. We asked her to at least try, and within a couple of hours a man was delivering the supplies to our home and a nurse arrived shortly thereafter to give Courtney the medicine. It seemed to help quite a bit, though not completely. She was able to keep her medicine down and eat a little this evening. The home health people, Option Care, have been really good about coming when we’ve needed them. This is at least the third time that they’ve come through when the doctors and nurses doubted they would. We’ll have to keep it in mind the next time Courtney just needs a little extra meds to get her through the day more comfortably. It’s always nice to have options that don’t include fighting traffic or spending time in uncomfortable waiting rooms. Nothing beats the comfort of your own bed. And we especially like ours.
Tomorrow Courtney has an appointment at the BMT. It’s a routine visit, but we’re hoping to have some results from Thursday’s biopsy. Tune in tomorrow to find out.
Adding to today’s woes, Aidan was also sick today. Our normally active and precocious two year old was a miserable lump on a couch today. He seemingly had his own bouts of nausea periodically throughout the day, and spiked a pretty high fever this afternoon. He’s been sleeping soundly the past five hours, so hopefully he’ll wake up to a much better day.
If you should add Aidan to your prayers, please also add a little friend of ours, Alexa Aigner. She’s three years old and has been fighting her own cancer for over two years now. She’s had her own down days lately, and could use a little boost. Click on her name to read about her amazing and painful journey eloquently related by her mother.
And all things, whatsoever ye shall ask in prayer, believing, ye shall receive.
- Matthew 21: 22
Tuesday, December 4, 2007
T minus 8 days and counting to BMT
Officially it’s now 8 days before the bone marrow transplant (BMT). The BMT phase really began yesterday. Courtney went to have the PICC line removed from her arm and a new central line (Neostar) placed in her chest. It’s almost identical to the Hickman Catheter that she had during the first round of chemotherapy, except that it’s the right side of her chest and has three lumens (lines or tubes protruding from her chest). The worst part, besides the post-surgery pain, was the fact that a 45 minute procedure had us at the hospital for almost the entire day. We left the house at 9:00 AM, arrived at 9:30; they took her to surgery at 12:30; brought her back at 1:15; and let us leave at 3:00. Kind of a waste of a full day, especially when it’s supposed to be your last day at home before being admitted to the hospital for five weeks. Oh well, at least she had a private room with a TV to wait in, and the procedure went very smooth.
Today was check-in day. They wanted her to arrive by 9:00 AM for admission to the hospital. Unfortunately we had to stop by the BMT clinic (five minutes from the hospital) to sign some consent forms. Courtney had accidentally dated all the forms with 2008 the other day. Legally they needed them to be correct before they would move forward with the transplant. It was an honest mistake that you can blame on “chemobrain” (an actual known condition and not a name that I call Courtney these days – I promise) or blame on nervousness as Courtney was signing papers that say she consents to procedures that could cause adverse effects including death. I think that’s enough to make anyone forget what year it is.
So we arrived at 9:30, thinking that we had just thrown off the 5 week schedule, since they were somewhat adamant that we arrive at 9:00. However, upon checking in and getting comfortable, Courtney mostly hung out and enjoyed time with her sister, Tracy. They didn’t even hook her up to her IV until after 10:00 PM. So, by my estimation, we were more than 12 hours early. Another day that could have been spent at home.
The hardest part of the day was having to say good-bye to Tracy’s children, Alex and Paige. It’s been so much fun having them around. We don’t get to see the much since they’ve been in Italy, so it was really nice getting to spend time with them. Since Tracy will begin receiving her medication in a couple of days, Alex and Paige were escorted by their Aunt Maureen to her home in Pittsburgh. She flew in yesterday just to be able to fly back with them! While it was hard seeing them go with tears in their eyes, it’s so comforting knowing that Tracy’s kids will be well taken care of, or in Maureen’s words, “spoiled rotten” for the next couple of weeks. They deserve to be catered to while their mom is here helping save Courtney’s life. Once again, the love and support from family and friends has been amazing and continues to be so. Thank you, Maureen. It was very nice to finally meet you.
We continue to be amazed at the blessings this trial has brought to our family. While it’s a crummy way to bring them about, it’s given us the opportunity to meet some wonderful people – the staff at the hospitals and clinics have been awesome; it’s given us time to spend with family we wouldn’t normally have had – it’s hard traveling with kids overseas, or anywhere for that matter; it’s helped us to reconnect with old friends and it’s been so much fun catching up with some of them. While at first all of these were silver linings in a very dark cloud (borrowing from an old cliché), they’ve helped to brighten our lives, reducing the cancer to little wisps of clouds that cast the occasional shadow.
One of the hardest parts of moving forward with the transplant is sending Courtney towards something that we know will make her feel worse than she does today. It’s like turning around and heading back into a storm that you just drove out of. Courtney’s been doing so well, with each day literally getting better. You just don’t want to see that trend reversed in any way. Yet, we know that we have to do this to give her the best chance for a cure. And were fortunate to be able to do this now and get it over with, without having to drag it out for months or even years. This time next week we’ll be able to say that Courtney is done with chemotherapy…forever. And that will be the biggest blessing of all.
Today was check-in day. They wanted her to arrive by 9:00 AM for admission to the hospital. Unfortunately we had to stop by the BMT clinic (five minutes from the hospital) to sign some consent forms. Courtney had accidentally dated all the forms with 2008 the other day. Legally they needed them to be correct before they would move forward with the transplant. It was an honest mistake that you can blame on “chemobrain” (an actual known condition and not a name that I call Courtney these days – I promise) or blame on nervousness as Courtney was signing papers that say she consents to procedures that could cause adverse effects including death. I think that’s enough to make anyone forget what year it is.
So we arrived at 9:30, thinking that we had just thrown off the 5 week schedule, since they were somewhat adamant that we arrive at 9:00. However, upon checking in and getting comfortable, Courtney mostly hung out and enjoyed time with her sister, Tracy. They didn’t even hook her up to her IV until after 10:00 PM. So, by my estimation, we were more than 12 hours early. Another day that could have been spent at home.
The hardest part of the day was having to say good-bye to Tracy’s children, Alex and Paige. It’s been so much fun having them around. We don’t get to see the much since they’ve been in Italy, so it was really nice getting to spend time with them. Since Tracy will begin receiving her medication in a couple of days, Alex and Paige were escorted by their Aunt Maureen to her home in Pittsburgh. She flew in yesterday just to be able to fly back with them! While it was hard seeing them go with tears in their eyes, it’s so comforting knowing that Tracy’s kids will be well taken care of, or in Maureen’s words, “spoiled rotten” for the next couple of weeks. They deserve to be catered to while their mom is here helping save Courtney’s life. Once again, the love and support from family and friends has been amazing and continues to be so. Thank you, Maureen. It was very nice to finally meet you.
We continue to be amazed at the blessings this trial has brought to our family. While it’s a crummy way to bring them about, it’s given us the opportunity to meet some wonderful people – the staff at the hospitals and clinics have been awesome; it’s given us time to spend with family we wouldn’t normally have had – it’s hard traveling with kids overseas, or anywhere for that matter; it’s helped us to reconnect with old friends and it’s been so much fun catching up with some of them. While at first all of these were silver linings in a very dark cloud (borrowing from an old cliché), they’ve helped to brighten our lives, reducing the cancer to little wisps of clouds that cast the occasional shadow.
One of the hardest parts of moving forward with the transplant is sending Courtney towards something that we know will make her feel worse than she does today. It’s like turning around and heading back into a storm that you just drove out of. Courtney’s been doing so well, with each day literally getting better. You just don’t want to see that trend reversed in any way. Yet, we know that we have to do this to give her the best chance for a cure. And were fortunate to be able to do this now and get it over with, without having to drag it out for months or even years. This time next week we’ll be able to say that Courtney is done with chemotherapy…forever. And that will be the biggest blessing of all.
Thursday, November 15, 2007
Days 17 and 18 Consolidation – More long days at the BMT clinic
It’s amazing what a difference a day makes. Yesterday Courtney was feeling much better, with virtually no headaches or nausea. The day started off with a fairly quick and painless visit to a respiratory therapist who performed the PFT (pulmonary function test). Courtney didn’t rank up at the top, but we think she passed. Then, after a quick breakfast at Wendy’s, we headed to the BMT clinic. They were really nice and let us come in two hours before our scheduled appointment. She had her blood drawn and then we waited for about three hours. The wait was for the Procrit shot and platelets. The platelets eventually arrived, but the Procrit didn’t. Apparently it’s a somewhat complicated and potentially lengthy process for the insurance company to pre-approve the Procrit due to it’s expense. She didn’t get it today either.
CBC results for the past two days:
So, what do these results tell us? That Neulasta really works. On the 5th, Courtney received an injection of Neulasta that’s supposed to help increase her Neutrophils before her bone marrow is fully functioning again. This is to help avoid the potentially dangerous neutropenic fever. So, in a way, her WBC and neutrophil counts are artificial. The hope is that by the time they drop down, her bone marrow will be back to running normal and her counts will stabilize. Apparently this is the same thing Procrit is supposed to do, except for her RBC’s. At least she can have those infused. Which she did today.
The other thing we learned from the CBC today is that she received a really good dose of platelets yesterday. Usually we see an increase of about 15 to 20 when she receives a bag of platelets. After receiving a bag on Sunday, her count was only 4 on Tuesday (not so good). Then Tuesday’s bag increased her platelets from 4 to 15. And finally yesterday, she got her bag of super platelets and her count increased to 74! So, hopefully she’s good to go for a few days.
It seems like today we got twice as much done in half the amount of time compared to the previous two days. Courtney received two units of blood, had a nice long visit from the Social Worker, and had her bone marrow aspirated. All in a day’s work.
The social worker was nice and asked Courtney a lot of personal questions. Apparently social workers get paid to be nosy and pry. Courtney was very honest and open with him, and he really seemed impressed by her attitude and demeanor considering what she’s been through, is going through and is about to go through. It’s likely she’ll be getting a “go for transplant” from him.
Right after his visit, she was taken to another room where some nice people, including a nice man with a very good drug called versed, painfully extracted some more of Courtney’s bone marrow from her hip. While the versed didn’t knock her out or take all of the discomfort away, it did help her to relax and not care so much about what they were doing. She said she’s going to ask for a little more next time. The unfortunate part is there WILL be a next time and possibly MANY more next times. : (
So, after three fairly long days at the clinic, we aren’t scheduled to go back again until Monday, and that should only be for a blood check and maybe blood and/or platelets depending on the results. We’re looking forward to having a nice three day break from doctor stuff and to having a nice relaxing weekend at home. We have 19 more days to enjoy at home until Courtney’s admitted for the transplant. But who’s counting?
One more thing – I looked up Procrit at drugstore.com. They sell it for $5099.63 for 18 ml. It always cracks me up when they price it a few cents under an even hundred. As if $5099 looks so much more affordable than $5100. Just for comparison, a can of Coke is about 354 ml. At that price Procrit costs $1,072,206.39/gal. Although they would probably sell it to you for $1,072,199.63/gal. No wonder the insurance company is stalling!
CBC results for the past two days:
Wednesday | Thursday | ||
WBC | 5.1 | 15.3 | 4.1 – 11.1 |
RBC | 2.70 | 2.62 | 4.01 – 5.31 |
HGB | 8.2 | 8.2 | 12.1 – 16.1 |
Platelets | 15 | 74 | 140 – 440 |
Neutrophils | 3.5 | 13 | 2.0 – 7.5 |
So, what do these results tell us? That Neulasta really works. On the 5th, Courtney received an injection of Neulasta that’s supposed to help increase her Neutrophils before her bone marrow is fully functioning again. This is to help avoid the potentially dangerous neutropenic fever. So, in a way, her WBC and neutrophil counts are artificial. The hope is that by the time they drop down, her bone marrow will be back to running normal and her counts will stabilize. Apparently this is the same thing Procrit is supposed to do, except for her RBC’s. At least she can have those infused. Which she did today.
The other thing we learned from the CBC today is that she received a really good dose of platelets yesterday. Usually we see an increase of about 15 to 20 when she receives a bag of platelets. After receiving a bag on Sunday, her count was only 4 on Tuesday (not so good). Then Tuesday’s bag increased her platelets from 4 to 15. And finally yesterday, she got her bag of super platelets and her count increased to 74! So, hopefully she’s good to go for a few days.
It seems like today we got twice as much done in half the amount of time compared to the previous two days. Courtney received two units of blood, had a nice long visit from the Social Worker, and had her bone marrow aspirated. All in a day’s work.
The social worker was nice and asked Courtney a lot of personal questions. Apparently social workers get paid to be nosy and pry. Courtney was very honest and open with him, and he really seemed impressed by her attitude and demeanor considering what she’s been through, is going through and is about to go through. It’s likely she’ll be getting a “go for transplant” from him.
Right after his visit, she was taken to another room where some nice people, including a nice man with a very good drug called versed, painfully extracted some more of Courtney’s bone marrow from her hip. While the versed didn’t knock her out or take all of the discomfort away, it did help her to relax and not care so much about what they were doing. She said she’s going to ask for a little more next time. The unfortunate part is there WILL be a next time and possibly MANY more next times. : (
So, after three fairly long days at the clinic, we aren’t scheduled to go back again until Monday, and that should only be for a blood check and maybe blood and/or platelets depending on the results. We’re looking forward to having a nice three day break from doctor stuff and to having a nice relaxing weekend at home. We have 19 more days to enjoy at home until Courtney’s admitted for the transplant. But who’s counting?
One more thing – I looked up Procrit at drugstore.com. They sell it for $5099.63 for 18 ml. It always cracks me up when they price it a few cents under an even hundred. As if $5099 looks so much more affordable than $5100. Just for comparison, a can of Coke is about 354 ml. At that price Procrit costs $1,072,206.39/gal. Although they would probably sell it to you for $1,072,199.63/gal. No wonder the insurance company is stalling!
Monday, October 29, 2007
Day 1 Consolidation
New round of chemotherapy and new hospital. After meeting with Dr. V last Thursday and deciding that we would proceed with a bone marrow transplant, we also decided Courtney would undergo the recommended round of consolidation chemotherapy under her care at UT Southwestern. We figured that since she would be going there for the transplant, we might as well go there now, allowing ourselves a chance to get to know the doctors and facilities, and allowing the doctors the opportunity to become familiar with Courtney. This way they will have a few weeks of first hand knowledge or her condition and reactions to the chemotherapy and other medications before the transplant procedure begins.
The hardest part about switching facilities is leaving behind the awesome nurses, techs and doctors that became like family during our stay at Harris Methodist. However, so far, everyone here at Zales has been great. And we have to admit the room is quite a bit nicer than her room at Harris Methodist. Note to Harris Methodist, the onocology floor is well past time for a serious makeover. A simple fresh coat of paint would go a long way. And get rid of the bump at the entrance to the bathroom; it’s a pain trying to get the IV pole over that all the time. A couple of little extra perks include a small fridge and dvd player. These small things just help ease the burden of being away from home, especially during an extended period of time.
So, the first day of consolidation came and went fairly quickly. We checked in shortly before 8:00 AM. At around 9:00 AM Dr. V came in with her PA (Laura), and the PharmD who will be verifying her chemo treatment. They said they would put a PICC line in, but this time they would use flouroscopy to see the line as it went in. At 9:30, Laura said Radiology was booked for the day and that she couldn't get her PICC until tomorrow, but would have Dr. V call down and use her influence. At 10:15, Laura came back to tell us she was on the schedule for Noon. Five minutes later, her nurse came in and said they were on their way to get her. By 11:30 she was back in her room after a flawless PICC line installation in her left arm. She flew through it without a single sedating drug and only local anesthesia! Much better than last time!!
Less than two hours later, Dr. Rohm came in to give her a spinal tap. This was a precautionary procedure to check her spinal fluid for leukemia. There are some forms of AML that appear in the spinal fluid and have to be treated with specific drugs. While they didn’t think her type would have this, they just wanted to make sure. This was obviously not a pleasant experience for Courtney. The main side effect has been head aches, but she’s doing great.
Laura the PA gave us some for information about the chemo and the duration of her stay. It will be similar to induction, with side affects occuring a week to 10 days later and her counts dropping to zero and going back up at a similar rate to what we saw last time. If she has a fever over 100.6 at any time, she will probably stay in the hospital until her neutrophils are back to 1000. If she looks good after the treatment, she will probably be sent home with instructions to return every other day. If during that time she gets a fever, she will probably be readmitted. Just like the induction treatment, she will need blood and platelet transfusions as her bone marrow goes off line. If she's not in the hospital, they will do the transfusions in the clinic as needed. They plan to leave her PICC line in when she goes home and set up a home health nurse to flush the line as needed. So, while were planning to be able to go home at the end of the week, we’re prepared to stay for the next 3 to 4 weeks if necessary.
The hardest part about switching facilities is leaving behind the awesome nurses, techs and doctors that became like family during our stay at Harris Methodist. However, so far, everyone here at Zales has been great. And we have to admit the room is quite a bit nicer than her room at Harris Methodist. Note to Harris Methodist, the onocology floor is well past time for a serious makeover. A simple fresh coat of paint would go a long way. And get rid of the bump at the entrance to the bathroom; it’s a pain trying to get the IV pole over that all the time. A couple of little extra perks include a small fridge and dvd player. These small things just help ease the burden of being away from home, especially during an extended period of time.
So, the first day of consolidation came and went fairly quickly. We checked in shortly before 8:00 AM. At around 9:00 AM Dr. V came in with her PA (Laura), and the PharmD who will be verifying her chemo treatment. They said they would put a PICC line in, but this time they would use flouroscopy to see the line as it went in. At 9:30, Laura said Radiology was booked for the day and that she couldn't get her PICC until tomorrow, but would have Dr. V call down and use her influence. At 10:15, Laura came back to tell us she was on the schedule for Noon. Five minutes later, her nurse came in and said they were on their way to get her. By 11:30 she was back in her room after a flawless PICC line installation in her left arm. She flew through it without a single sedating drug and only local anesthesia! Much better than last time!!
Less than two hours later, Dr. Rohm came in to give her a spinal tap. This was a precautionary procedure to check her spinal fluid for leukemia. There are some forms of AML that appear in the spinal fluid and have to be treated with specific drugs. While they didn’t think her type would have this, they just wanted to make sure. This was obviously not a pleasant experience for Courtney. The main side effect has been head aches, but she’s doing great.
Laura the PA gave us some for information about the chemo and the duration of her stay. It will be similar to induction, with side affects occuring a week to 10 days later and her counts dropping to zero and going back up at a similar rate to what we saw last time. If she has a fever over 100.6 at any time, she will probably stay in the hospital until her neutrophils are back to 1000. If she looks good after the treatment, she will probably be sent home with instructions to return every other day. If during that time she gets a fever, she will probably be readmitted. Just like the induction treatment, she will need blood and platelet transfusions as her bone marrow goes off line. If she's not in the hospital, they will do the transfusions in the clinic as needed. They plan to leave her PICC line in when she goes home and set up a home health nurse to flush the line as needed. So, while were planning to be able to go home at the end of the week, we’re prepared to stay for the next 3 to 4 weeks if necessary.
Tuesday, October 9, 2007
Day 18 - Side effects
Unfortunately, today was not a very good one for Courtney. She started off the day with really low red blood cells. Anemia - it makes you weak and tired. She didn't get blood until the end of the day. So, she should have plenty of energy in her dreams tonight. Hopefully she'll wake up feeling slightly better than this morning. However, that probably won't be the case. The crummy day ended on an even crummier note as her body decided her haircut wasn't short enough. Just when we thought she might be out of the woods with regards to chemo side effects, one more has to rear its ugly head.
"Cancer sucks." That pretty much sums it up. Sorry. I tried hard to think of another way to phrase that, but nothing seems to do it justice. Except for the outpouring of love we've received, there really aren't many good aspects of cancer. My heart goes out to everyone, young and old, who has ever had to battle it, in whatever form it comes in. It's a hard battle to fight; fortunately we don't have to fight it alone.
"Cancer sucks." That pretty much sums it up. Sorry. I tried hard to think of another way to phrase that, but nothing seems to do it justice. Except for the outpouring of love we've received, there really aren't many good aspects of cancer. My heart goes out to everyone, young and old, who has ever had to battle it, in whatever form it comes in. It's a hard battle to fight; fortunately we don't have to fight it alone.
Monday, October 8, 2007
Day 17 - Mini Makeover Day
I don’t know this first hand, but apparently, when you spend a lot of time in a hospital bed, it’s nice to have short manageable hair as opposed to long hair that’s easily tangled and requires extra maintenance. That’s why Courtney asked a friend to come to the hospital and cut her hair. It took a few days to coordinate schedules, but Courtney was finally able to get the hair cut she’s been dreaming of…for the last five days. I love it and she does too. Thank you Angela!
As for the reason she’s in the hospital, nothing has really changed. We’re well into the watch and wait phase of the treatment. Her WBC’s are 100 and she had a few monocytes show up. Dr. Jordan said this could indicate that her bone marrow may be coming back online. Overall, she had a really good day. While the medications make her somewhat loopy, they seem to really help keep the nausea at bay. Unfortunately, she’s not 100% free of the intestinal discomfort. That’s her main source of discomfort for the time being. And one more thing Dr. Jordan mentioned was that she’s likely on the downward trend of chemo side effects as they slowly dissipate from her body. Hopefully that means the worst is truly behind her.
As for the reason she’s in the hospital, nothing has really changed. We’re well into the watch and wait phase of the treatment. Her WBC’s are 100 and she had a few monocytes show up. Dr. Jordan said this could indicate that her bone marrow may be coming back online. Overall, she had a really good day. While the medications make her somewhat loopy, they seem to really help keep the nausea at bay. Unfortunately, she’s not 100% free of the intestinal discomfort. That’s her main source of discomfort for the time being. And one more thing Dr. Jordan mentioned was that she’s likely on the downward trend of chemo side effects as they slowly dissipate from her body. Hopefully that means the worst is truly behind her.
Monday, October 1, 2007
Day 10 - Final Diagnosis
Well we finally have the diagnosis we've been waiting for - Courtney has the M0 version of AML. What this means is that she has just three days left of Cytarabine and the Idarubicin is finished. It means that the doctors now have confidence that they're giving her the right treatment. It means that we have a clear and concise plan as to how to beat this thing. We've been firing out of all canons and now know that we can continue to do so confidently.
Unfortunately, this news didn't help Courtney's day to go much better. Though she's emotionally growing more stable by the day, evidenced by the fact that she was actually able to start reading the many wonderful messages that have been posted and sent to her, she's anxious about the side effects of the therapy. It didn't help that she had an hour long nose bleed. Tonight she fought to fall asleep saying multiple times that her skin was crawling. Who knows where that came from. It could be a side effect of one of the many medications she's on, or it's simply anxiety brought on by the diagnosis, the nose bleed, the upset stomach, the knowledge of chemicals being injected into her body, etc. I still can't imagine what she must be going through. She's sleeping now. She never snores, but is now. It's the first time in my life that snoring is music to my ears. It means she's in a deep sleep - exactly what she's needed.
Unfortunately, this news didn't help Courtney's day to go much better. Though she's emotionally growing more stable by the day, evidenced by the fact that she was actually able to start reading the many wonderful messages that have been posted and sent to her, she's anxious about the side effects of the therapy. It didn't help that she had an hour long nose bleed. Tonight she fought to fall asleep saying multiple times that her skin was crawling. Who knows where that came from. It could be a side effect of one of the many medications she's on, or it's simply anxiety brought on by the diagnosis, the nose bleed, the upset stomach, the knowledge of chemicals being injected into her body, etc. I still can't imagine what she must be going through. She's sleeping now. She never snores, but is now. It's the first time in my life that snoring is music to my ears. It means she's in a deep sleep - exactly what she's needed.
Saturday, September 29, 2007
Day 8
The therapy is doing what it's supposed to. Courtney's WBC's are down to 39,900, from 83,800 yesterday and a high of 102,000 when she was admitted. Within the week these should be down to zero. Essentially we are re-booting Courtney's immune system. It's like hitting Ctrl-Alt-Del on her bone marrow.
Since the bone marrow is also responsible for producing RBC's (red blood cells) and platelets, these will need to be given to her as needed. As such, she received both, blood and platelets today and will need more as the treatment progresses.
The main thing we want to see drop are blasts. The blasts cells are made in the bone marrow and are supposed to mature into different types of WBC's (white blood cells). Leukemia prevents the blasts from maturing, thus making them useless. They are included in her WBC count. Typically you want 0-5% of your WBC's to be blast cells. In Courtney's case they've been more than 95%. So, the good news is that the absolute count of her blasts dropped to 37,900 from 81,300 yesterday. Again, we essentially want 0 blasts.
At the end of seven days, her 'therapy will end and her bone marrow will essentially be allowed to 'power back on'. Then her WBC's will rise back up to their normal levels, with little to no blasts present.
So, all in all, it's expected, but good news. The other good news is that I was able to bring the kids to see Courtney today and spend some time alone with her. Thank you grandma, grandpa, aunt Kelley and Jimmie for taking care of the kids! We had a really nice visit and she's had a really good nap while I've been writing. Other than a headache, sore incision, upset stomach and leukemia, she's feeling OK. I wish she didn't have to go through this.
Since the bone marrow is also responsible for producing RBC's (red blood cells) and platelets, these will need to be given to her as needed. As such, she received both, blood and platelets today and will need more as the treatment progresses.
The main thing we want to see drop are blasts. The blasts cells are made in the bone marrow and are supposed to mature into different types of WBC's (white blood cells). Leukemia prevents the blasts from maturing, thus making them useless. They are included in her WBC count. Typically you want 0-5% of your WBC's to be blast cells. In Courtney's case they've been more than 95%. So, the good news is that the absolute count of her blasts dropped to 37,900 from 81,300 yesterday. Again, we essentially want 0 blasts.
At the end of seven days, her 'therapy will end and her bone marrow will essentially be allowed to 'power back on'. Then her WBC's will rise back up to their normal levels, with little to no blasts present.
So, all in all, it's expected, but good news. The other good news is that I was able to bring the kids to see Courtney today and spend some time alone with her. Thank you grandma, grandpa, aunt Kelley and Jimmie for taking care of the kids! We had a really nice visit and she's had a really good nap while I've been writing. Other than a headache, sore incision, upset stomach and leukemia, she's feeling OK. I wish she didn't have to go through this.
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